grandchild has autism

My g.son (nearly 21 yrs), was diagnosed as Autistic when he was in primary school. Despite a good SENCO at his secondary school it did not work almost from the start - and he was soon being suspended over and over again. Indeed, the Senior Senco officer at the education department labelled him at 'Uneducable'. My daughter and son in law fought a long, hard battle to get him into a special school for autistic children - finally won and he went for three and half years as a weekly boarder.

After he left with a good clutch of GCSE's and, even more important, a whole number of Management techniques, he went on to A levels at the local FE College. Their Senco department decided it was best to take it slow, so the first year he just did one A level, picking up a second one during the second year and so on. At the end of the four years he left there with 3x A and 1 x B (his first one), in Further Maths, Chemistry, Physics and Maths.
Now happily settled in (even in these Covid times) doing a 4-year Masters Course at Uni in Chemical Studies. Still receiving some support there, but has actually made friends amongst his hall fellow students, and has actually become their spokesmen in regard to some problems with those Halls.

Obviously, all autistic children are different, as are all children, but if they are helped to understand their condition and how to manage it - they can lead perfectly normal lives.

My grandson is 6 and is autistic and he is just so wonderful. He’s a robust healthy. His difficulty is his speech which is very delayed so he makes a lot of noises and his words are coming and he’s in his own world or he seems to be a lot of the time. We are here for them in the way we have him over to visit us to give them a break. He loves to visit us and I have to say we still picked him up during this lockdown because he doesn’t understand why he couldn’t see us during lockdown one and it was torture for all of us. Please don’t get cross with me because of this. They’ve all had Covid and so have we last year.
I’d like to talk to other grandmas of autistic grandchildren for other ideas.

Really good post Sarnia?
Those of us with either autistic children or grandchildren realise how hard it was, particularly at first in those early years, in uncharted waters.
Reading and trying to understand as much as possible is a great help, and sometimes just being there for the parents Willow when they are tired and dispirited.Love, in other words, for the child and the parents.

My grandson had his diagnosis age 5. He not only has autism, but also childhood apraxia of speech, and consistent phonological disorder with delay. He is 10 now, and a lovely affectionate boy. He is very literal, and has difficulty reading facial expressions and body language.
Because the family has moved around quite a bit, speech therapy has been sporadic. Intensive therapy would be the way to go, but where do you find such a thing without going private? He has improved slightly recently and I now understand much of what he says, or perhaps I have just learned how to decipher him!

My great niece aged 5 has been diagnosed high functioning autistic, is at school and has been given a maths age of 14.

Don't worry about how to help with your little one, as others have said, be there to support the family, and love him for the person he is.
Do not grieve for the person he might have been.

Many thanks again for all your kind words and advice. I hope this thread has been helpful to others as well as me. My grandson today sat for 2hours just strumming on his dads guitar his concentration was intense and wonderful to watch. Musical instruments here we come!

This has been such a valuable post, my almost 3 year old grandson is waiting for further assessment, HV & SLT are involved but very slow to get reports etc completed. Hopefully this wont take much longer. This gorgeous little boy has gone from one or two words to being non verbal and from playing with other children to preferring to being alone.. He loves books, dinosaurs and music but most of all our dog which he’ll spend hours playing with and helping her feed out of her bowl! He’s a happy child and so, so loved that’s what matters.

Welbeck, personally I agree with you and have taught both of my DC about bodily autonomy, however it did cause a bit of a furore with the older generation in my extended family that I wouldn’t make them hug great auntie Jessie or whoever when they saw them annually to say thanks for a Christmas gift. It seemed to confound them that saying no to a hug was even an option - and even when explained it went down like a lead balloon tbh.
It became even more important to us when nephew was diagnosed and is now just second nature within the family.

There’s lots of good advice here but I just want to point out that not all autistic children have the same needs and sometimes it’s difficult to establish exactly what each child has a problem with. My DGC doesn’t have tics or a problem with noise and is very happy to give cuddles but does have a problem understanding when people are joking. A thoughtless remark meant in jest can cause great hurt. Facial expressions help many of us to understand where others are coming from but many autistic children can’t understand this.
willow your little grandson is obviously loved and that will give him a great base for growing up. Supporting his mum and dad will help a lot.

i don't think any adults should touch/ hug children without their permission.

Also recommend checking out the NAS website. There are also some great short video clips on YouTube which give insight into the condition.
My sis in law has (at times) struggled as my nephew has grown and she says that having me there to vent to and reassure her that she is a good mum has been helpful. Just having a shoulder to cry on and being able to have a vent on a bad day is my role in supporting her. Just listening and reassuring.

As you GC’s tics etc become more apparent, the whole family need to be consistent in their communication and approach towards them. My gran struggled to understand why she needed to ask my nephew before touching him, but physical contact was hard for him - so we all asked “would you like a cuddle?”etc and he reacted well to that, unwelcome or unexpected contact would usually cause him a huge amount of stress.

Finally and this may not suit your GC, but a lifesaver for us was the discovery of noise cancelling headphones. My nephew would get overstimulated around too many people/colours/noises etc and my dad let him use his old headphones off the building site to block everything out and calm him down. We did buy him his own pair, but at mum and dads he always wanted my dads ones which looked huge on his tiny wee frame!

Wishing you and your family all the best.

My Grandson was diagnosed as being on the spectrum at 4, he is nearly 20 now. Unfortunately my parents could not accept that he was "different" even when I told them we all are! He has a very high IQ but cannot bear communicating with outsiders only really talking to his Mum and me. He doesn't like to be touched by anyone other than Mum but is such a caring and thoughtful person.
My way of helping my daughter was to be a listening ear and a shoulder to cry on when she needed me, no different really to anyone with adult children! As others have said do your research on Autism but just let them know you are there for them when they need you.

I learned so much by reading personal accounts written by autistic children and adults. You can become overwhelmed by the amount of information on websites.

What lovely stories and so much help for you , Willow. Good luck with everything and a big hug for your darling grandson.xx

In a way it is good he has been diagnosed because he will get help. There are so many out there who are just dismissed as ‘naughty’ children.

Lots of very good advice here Willow73. I can't offer any more.

I found out as much as I could so I could be there for my niece and step son with boys that have autism.. My niece has 4 boys, the youngest, now 7. My stepson has a boy, now aged 10. It took nearly 3 years to get him diagnosed. Both boys get full time support at their respective schools.

We also have a friend who adopted two children. The boy (age 5) has autism. They tried to home tutor him for a short while during then pandemic but he has gone back to school (as a vulnerable child). He too has a full time TA.

There was a BBC drama series called "A word" a few years ago. Brilliant and thought provoking. It's still on BBC iPlayer.

Yes I agree the NAS is a good place to start. I would suggest you read a book called The Reason I Jump (can’t remember who it’s by but you can Google it). It is written by a boy with autism and gives an insight into how he thinks. I found it very useful. The more you read, the more you understand. The more you understand the better you are able to know why your DGC sometimes acts in a certain way.
You would be surprised to know how many of us on GN have children /grandchildren with autism.

My 40 year old son is autistic. It was not diagnosed in childhood although he did have developmental delay. He was being 'assessed' from a young age. He also has learning disability, also not identified. His IQ test as a child was indicating him to be in the normal range, ie 100. His adult IQ is 69 meaning he just falls within the learning disabled category. So 98% of the population fair better than him. He has his own flat, cooks very good meals. He also passed his driving test a few years ago, so he has his own car. He is doing okay but the professionals got it wrong. I don't trust them.

Our grandson is 13 now but was diagnosed at 3. There was plenty of support available(ask at the GP surgery or the local council) and we paid for Speech Therapy lessons because of his delayed speech but this was a waste of money for him as his speech developed rapidly by itself when he went to school. He has a twin and they have lived with us on and off over the years. As far as possible we treat them the same with some allowances due to his autism. We feel that if he is to survive in the real world he must conform to a certain extent. He still has meltdowns due to anxiety and he gets teased for this at school (he is in mainstream with an autistic unit) and so we are trying to deal with this at home. The main thing is that all children on the spectrum have different needs but their basic one like other children is unconditional love Tough at times but rewarding. We love him to bits and so does his twin sister though she will adamantly deny it!

Willow73

Thank you for all your kind comments. I will look at all the sites you have mentioned. My grandchild is 3 and we thought his behaviour was just his age. We will love him whatever of course .

My grandson was 3 when he was diagnosed with autism. At the time it seemed like a death sentence but 8 years on and nothing could be further from the truth. The National Autistic Society is a good place to start with information because the autistic spectrum is huge and the saying 'When you have met 1 autistic child, you have met 1 autistic child' is very true as they differ greatly. If your GS has been diagnosed then I assume he has been assessed by the professionals, such as pediatricians, Speech & Language etc. Autism has a louder voice these days but ask any parent with an autistic child and the majority of them will say they have to battle for everything their child needs in order to progress. It can be a frustrating process at times. My GS has a Statement of Educational Needs (it may have a different title now) and this is a tailor made, legally binding document detailing the provision that the education system has to provide for him to help him achieve his potential. Getting one of these may be your first battle but go for it because it opens doors. If your GS's nearest nursey or school is not the best place for him, his parents can choose the one that will be best for him and they have to take him. Statemented children are usually top of the entry criteria for schools. These are practical things you can put in place. Just as important, however, is unconditional love. Autistics are just wired up differently to us neuro-typicals. I have learned a lot as I have gone along as you and your family will too. I wish you courage and tenacity for the times you need to fight his corner, the understanding of what makes him tick and the fulfillment of watching your much-loved grandson grow.

Thank you for all your kind comments. I will look at all the sites you have mentioned. My grandchild is 3 and we thought his behaviour was just his age. We will love him whatever of course .

My DS and DiL have two children on the spectrum and have made it very clear that there is nothing we can ‘do’ other than love the children and just treat them as we do their third child. It can be very difficult and we don’t have the same relationship with the 2 as with their sibling. The main thing is to be prepared to accept them on their own terms. They don’t want to visit us and they don’t always appear on family zooms. The oldest GD made a supreme effort to attend my 70th birthday lunch a couple of years ago and I made it clear that I really appreciated her attendance, albeit that she sat with her headphones in right through the meal.

My friends husband is a top consultant and on the autistic spectrum it is absolutely NOTHING to do with intelligence it is more about over active areas of the brain causing reactions that are quite normal to the person but deemed un normal by society (who the heck’s needs normal or even knows what normal is) and if they are living outside what is condiered ‘right’ it can be very very frightening and not understandable world for them
I d be interested to hear from. willow what age the child is and what manifest itself to seek a diagnosis

There are many men high up in academia who are widely believed to be autistic. Absolutely brilliant in their fields.

There are so many ways to be human. I don't know why we fixate on 'the norm' really.

Stella1949 put it very well Willow your love and support will be very important to the family.

BlueBelle just commented exactly what I was thinking! Be supportive and above all, communicate with each other.

Ann Hegerty is Autistic and I believe she has a degree in languages ( I might be wrong but don't shoot me GNetters ). She is also a very intelligent and articulate lady.

Don't despair over the "diagnosis", enjoy your grandchild and with the right support and buckets & buckets of family of family love will grow into an amazing adult, I'm sure.